"The trouble is that once you see it, you can't unsee it. And once you've seen it, keeping quiet, saying nothing, becomes as political an act as speaking out. There is no innocence. Either way, you're accountable."
— Arundhati Roy

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31 March 2012

Dear well-meaning strangers

Starting tomorrow, you are about to be bombarded with public service announcements, billboards, letters, emails, graphics, and all manner of multimedia about "autism awareness."

Here's a revolutionary idea.

Every time you see or hear something that says something about April being "Autism Awareness Month," mentally replace that "awareness" word with "acceptance." There is a wide gulf between "awareness" and "acceptance." Not all awareness is good awareness, and awareness itself can be the farthest thing from acceptance.

Some Autistics have decided to reclaim April and call it Autism Acceptance Month. Paula Durbin-Westby's blog for the Acceptance Day and Month has spearheaded an effort that has spread to the Thinking Person's Guide for Autism, the Autism Society of Northern Virginia, and across the internet. (Go ahead, type "autism acceptance month" into Google. I can wait for a minute or two while you do that.)

Awareness only means some peripheral knowledge that something exists, whether as an idea, a fact, or a reality. One might be "aware" of Al Qaeda, but that says nothing about your knowledge or understanding of the group's structure, leadership, ideology, or history. All it means is that you are aware that something called Al Qaeda exists. Maybe you know that Al Qaeda is a terrorist group. Maybe you know that Usama bin Ladin was its leader until he was killed a year ago. But if you were to walk into a room full of Al Qaeda's leaders or full of counter-terrorism agents discussion a sensitive operation targeting Al Qaeda, and proclaim to be "aware" of Al Qaeda, they would all laugh at you.

Awareness means very little.

To be aware of autism means only that you know that something called "autism" exists. You may not even know any Autistic people. Or you may know one or a few, but still have very little grasp on what exactly autism is or means, never mind the full breadth and depth of Autistic culture and community.

Autism acceptance is a revolutionary idea when juxtaposed with autism awareness. Anyone can be aware. It takes about two to five seconds to become aware of something, perhaps slightly longer if you have cognitive delays. Acceptance requires actual effort and the willingness to set aside misconceptions, preconceived notions, stereotypes, and media-branded images and ideas. Gone with the idiot savant, the slightly socially awkward genius, the presumption of incompetence, the pity and fear based campaigns, the debunked theories of causation and recovery.

Acceptance means the active consideration of the idea that Autistic people have a unique and natural and normal way of existing in the world. It comes with its challenges but also with many rewards. Disability does not mean defective or broken or diseased. It means lacking typical abilities or lacking specific abilities. Autistic is not a swear word. It is a beautiful word, a name for an identity that represents an entire group of people who are diverse in their personalities, characters, abilities, and deficits. Autism is not homogeneous. Autistics are not homogeneous. But we are everywhere; we are a part of your community. We are in your children's schools, your houses of worship, your neighborhoods, and your workplaces.

We cry for acceptance, but usually our voices are silenced or ignored. Awareness campaigns are very rarely created by us about us, but about us without us. Please pay very close attention to what you see or hear about autism this month. Question what you read. Examine the rhetoric used to grab your attention while passing through a subway station or driving along an interstate. What words are used? How often will you hear "intervention" or "treatment" or "devastating" or "awareness?" How often will you hear "acceptance" or "supports" or "self-determination" or "self-advocacy?" You will hear words taken from the fields of biology, psychiatry, psychology, and charity. You will hear very few words taken from the fields of sociology, public policy, and disability studies.

If you have children, teach them to pay attention to the type of language they see or hear, and teach them to question what the people who put that language there wanted them to think when they heard or saw their words. Introduce them to Autistic people you know -- children, youth, adults. Instead of carefully-positioned, stark images of Autistics on billboards, let them see the real faces of autism. Show them that accepting their peers is far more important and respectful than merely tolerating them.

And if you can, take a stack of sticky notes (or better yet, paper and that blue painter's tape) and a permanent marker, and write "acceptance" on them. Write messages of hope and community -- there are Autistic youth and adults who are there to welcome Autistic children into the community, support them as they age into adolescence and adulthood, and speak for them as policymakers try to remove access to necessary supports and services. And whenever you see a billboard or a poster somewhere about autism awareness this month, take one of those sticky notes and cover the word "awareness" with "acceptance." Leave a website or email address for people to copy so they can learn more.

Don't fall for the awareness campaigns this month. Fight for acceptance.

9 comments:

Minds that are able to see things from new and fascinating perspectives, should not only be accepted, but also encouraged and appreciated because without their minds we would only be able to understand things from our own 1 dementional interpretation. <3

My fiancé counts among the ranks of Hoyas with Autism. Sure, he's a little different, but frankly that's why I like him (I'm not Autistic, but I have a very prevalent LD as well). I'm proud of all he is and all he has the potential to become. Today the school I'm student teaching at had an Awareness Day (Dress in blue! Yay!)... well, I forgot, and had judgement passed upon me by students who, for the most part, know it exists, but that doesn't stop them from bullying kids with Asperger's, Autism, or other LDs. Less mindless, empty awareness and more kindness and compassionate acceptance!

thank you! i am the proud sister of an autistic person. i find so much of what people about autism to be ridiculously condescending, and incorrect (the same could be said for all disability, really). i post this blog and share it with everyone i can!

Hi! Thank you for sharing your thoughts with me. I manually approve comments, so sometimes it takes a few weeks, months, or even years to find and approve comments. This delay is normal. (Note that I also don't publish every comment, since this is my personal blog.) Unfortunately, anonymous commenting isn't available anymore since it resulted in over one million spam comments in a short period.

Autistic Hoya strives to be

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Photo by Kory Otto-Jacobs, taken March 1st, 2013 in Farragut Square Park, Washington, DC, United States, for the National Day of Mourning vigil for disabled people murdered by family members or caregivers. This is an annual observance that was originally organized by autistic activist Zoe Gross in 2012 following the murder of 22-year-old autistic man George Hodgins by his mother.

This is a cropped, horizontal banner style black and white photograph depicting one of the vigils and its participants (who are of various races, genders, and dis/ability statuses), including Kerima Çevik, Nuri Çevik, Patrick Cokley, Yoshiko Dart, Chad Carson, Linda Finder, Barbara Platt, Taylor C. Hall, and Samantha Bodwell, who is holding a large poster with a photo and the name of Benjamin Barnhard. Lydia Brown (that's me) is in the middle with their back to the viewer. Many participants are holding cameras, video, recorders, or phones. There is an American Sign Language interpreter. This picture shows about 16 people.

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